#pwsawareness

[vikashkumar7544]

🌟 Understanding Prader-Willi Syndrome (PWS) 🌟

PWS is a complex genetic disorder that affects various aspects of health and development.

Our comprehensive guide delves into the causes, symptoms, and treatments, aiming to raise awareness and support.

👉 Explore the article: https://revisiontown.com/prader-willi-syndrome-causes-symptoms-treatment-living-with-pws-explained/

[robert83]

Prader-Willi Syndrome: PWS is a lifelong, life-threatening condition. There is no known cause of PWS, nor is there a cure — yet Thanks to our friends at Children's Wishes for granting Rose her wish back in 2016! We got to stay at Give Kids The World and went to Disney, Universal Studios, and Clear Water Aquarium. We had so much fun. Rose remembers it all. We miss it. #pws #praderwillisyndrome #praderwilli #praderwillisyndromeawareness #pwsawareness #praderwilliawareness #givekidstheworld #yourwishourjourney #childrenwishes @gktwvillage @childrenswishes https://www.instagram.com/p/CAFcWpqHVY-/?igshid=4byaq88zvi4w

[robert83]

Prader-Willi Awareness They may have small sex organs, and their voices may not change in puberty. People who have PWS usually aren't able to have children. Here is Rose holding Raelyn! #pws#pwsawareness #praderwillisyndrome #praderwilli #praderwillisyndromeawareness https://www.instagram.com/p/CACqp3Nnc4K/?igshid=18hpxnwsxhdw7

[robert83]

Prader-Willi Awareness The chance for another child having PWS is less than 1%. However, this risk may be as high as 50% in families where an imprinting defect is the cause of a child's PWS. In honor of Mother’s Day, here is a picture of my Beautiful wife with our two beautiful girls! My wife is amazing. She is the backbone to our family. Without her I would have no idea where I would be. Our dream was to always have a family together. Back in 2011 Rebecca and I had suffered a miscarriage and that was extremely heart breaking. We did not give up. And in 2012, Rose came along. We did not expect to have a Special Needs child, but we did not care and still learn and go on her journey with her. A couple of years go by and yet again we suffered another miscarriage. We did not wether to stop there and call it quits or continue. We decided we were not giving up and that is when Raelyn cane along. Raelyn is extremely energetic from the time she wakes up till she goes asleep. Rebecca has both kids during the day and is Rose’s teacher for this distance learning. She is stressed at times, but she is amazing. Happy Mother’s Day sweetheart!! We love you! #pws #pwsawareness #praderwillisyndromeawareness #praderwilliawareness #mothersday #amazingmother https://www.instagram.com/p/CAAUnQRnfql/?igshid=vsxj0p8njuja

[robert83]

Prayer Willi Awareness: Rebecca’s pregnancy was as perfect as perfect can be. Everything was great until Rose could not suck on a bottle. Rose was rushed to Women & Infants Hospital where they did countless tests. Rose was poked some many times because the IVs kept coming out. They even put an IV in her head. But the nurses and staff treated us like family and told us everything would be ok. Below was one of the nurses we had there. #praderwillisyndrome #praderwilli #awareness #pws #pwsawareness #praderwillisyndromeawareness https://www.instagram.com/p/B_92ojcn9_6/?igshid=k8ktwgj1pan3

[robert83]

Prader-Willi Awareness: The time immediately following a diagnosis of PWS can be very difficult, and parents typically are dealing with an overwhelming amount of new information. It's important to take the time you need to process what is happening and connect with others for support. That said, early interventions should begin as soon as a diagnosis of PWS has been made. Research indicates early diagnosis and therapies may reduce the duration of tube feeding and prevent early obesity in Infants with PWS. Early intervention in children under age 3 years, particularly physical therapy, may improve muscle strength and encourage achievement of developmental milestones. Physical, occupational, and speech therapies are recommended for infants with PWS. Rose had all 3 through Seven Hills and they all became our family! #pws #praderwillisyndrome #praderwilli #pwsawareness #praderwillisyndromeawareness #praderwilliawareness #earlyintervention https://www.instagram.com/p/B_4WSsuHhda/?igshid=10ku1viqkfi6w

[robert83]

Developmental Delays Children with PWS have their milestones delayed about 100 percent, meaning that if typical children are sitting at 6 months and walking by 12 months, children with PWS tend to first sit independently at 12 months, and walk by 24 months on average. To help speed that process, we work with the child’s physical therapist to get the child to do as many core strengthening exercises as possible. I also prescribe ankle-foot orthoses (AFOs) to help stabilize the ankles, making it easier for them to get up standing. Once they are walking well, we’ll shorten the braces, or discontinue them. #pws #praderwillisyndrome #praderwilli #pwsawareness #praderwilliawareness (at Woonsocket, Rhode Island) https://www.instagram.com/p/B_2n_8Nn0Xd/?igshid=1xbnyj40od9jf

[robert83]

Prader- Willi Awareness: For parents of an infant with PWS, one of the first major challenges they face is feeding difficulties and having their baby consume enough nutrition and calories. Data from the Global PWS Registry shows that more than 75% of registry participants required a feeding tube in infancy. The most common type of feeding tube used in infants with PWS is a nasogastric tube (NG-tube), which goes through the nose to carry food into the stomach. The second most common type of feeding tube used is a gastrostomy tube (G-tube), which is a portal in the abdomen that delivers food directly into the stomach (also referred to a PEG tube). More rarely, other types of feeding tubes be used, including naso-jejunal (NJ) tube, which goes from the nasal cavity through the stomach and into the small intestine. Rose had a G-tube from 3 weeks old until med September of the same year. She actually stopped using it on our wedding anniversary. #gtube #pws #pwsawareness #praderwilli #praderwillisyndromeawareness #praderwillisyndrome https://www.instagram.com/p/B_zQ7AxHouR/?igshid=tzx64x3ta0r